This copy is for your personal non-commercial use only. To order presentation-ready copies of Toronto Star content for distribution to colleagues, clients or customers, or inquire about permissions/licensing, please go to: www.TorontoStarReprints.com

A new approach to palliative care?

Priya Sayal suggests that palliative care is broken and that this is in large part due to patient and health care provider reluctance to access palliative care because of a fear of the name.

As palliative care physicians, we agree that there are many challenges in the provision of palliative care in Canada. First among these, however, is not the name “palliative care” but a lack of financial, structural and personnel resources.

In Canada, access to palliative care varies from good to abysmal, depending upon one’s postal code. We see the devastating effects of these discrepancies every day when caring for patients facing life threatening diagnoses.

Article Continued Below

As Ms Sayal wrote, changing the name “palliative care” to “supportive care” has been shown to improve referrals in a 2011 study carried out in Texas. This study compared two 8-month periods before and after the name change.

We suspect that if the study continued over a longer period of time, referrals would drop off. Why? Eventually the term supportive care would be stigmatized in the same way that palliative care has been.

What is needed to combat this fear is a greater understanding of what palliative care entails and a greater societal acceptance of death as a natural part of life. We in palliative care treat not just the imminently dying, but more commonly those living with difficult symptoms, such as pain. In fact, studies have shown that early palliative care can actually extend life for some patients with cancer.

Ms Sayal is correct; palliative care ought to be a right and not a privilege for Canadians. Unfortunately, we are far from realizing that right; not because of stigma, but because of a poverty of resources aimed at making good palliative care available to all, regardless of postal code.

Dr. Miriam Mottiar, Division of Palliative Care, Department of Medicine, University of Ottawa and Dr. Irene Ying, Division of Palliative Care, Department of Family and Community Medicine, University of Toronto

I agree with Priya Sayal that the term palliative care is often misunderstood and foreboding. However, the term “general supportive care” has been a time-honoured term to describe all the nursing care over and above the definitive medical treatment for a patient who does not have a terminal or incurable illness.

Dr. Timothy Quill in Rochester and others have been using the term comfort care for some years, as a preferred alternative to palliative care. Comfort care is positive and unambiguous and easily understood.

Dr. E. Robert Langford, Toronto

As someone up in years, I was scared witless when I read, “The public has been galvanized around a conversation about the legalization of medically assisted dying, an incredibly important issue. It’s our system formal acceptance of a person’s right to die. It’s a step forward — one that I would argue is necessary, but not sufficient, to make dying with dignity [code words for assisted suicide] the rule, as opposed to the exception.”

When I regained my composure, I realized that the author, a “two years into medical school” student, had later somehow clarified that she meant only the terminally ill patients who accept “the service.”

Then she argued for the change of the name “palliative care” — which also means end-of-life or comfort care — to “supportive care,” with the ultimate purpose of having patients, even the chronically ill, receive it earlier so they can have a “good death,” or, as I would put it more frankly, to make them believe that some curative efforts are still made to save their lives.

“An incredibly important issue” about life is the duty not to rush it towards a so-called “good death.”

Jaime Oksemberg, Toronto

Had I not been obliged to deal with the recent passing of my adult daughter Avryl, the topic of palliative care might never have struck me as pertinent. Sadly, the loss of someone so precious to a disease as insidious as cancer more or less required all family members to face up to the fact that some people aren’t as fortunate as others, in that not all illnesses respond to treatment, and not all patients enjoy improved or improvable health.

Avryl’s clock began to tick faster than it should have, at a time when she had everything to live for, including a lovely daughter of her own and a fiancé who was set to spend the rest of his life with her.

The appearance of cancer in her liver several years after an initial diagnosis of breast cancer — which she and our family hoped had been successfully dealt with — left us in shock and denial. I witnessed my daughter tell her oncology nurses — who sought to make her aware of the seriousness of her ailment, and who suggested she let her daughter know that her mother is dying — that “I’m not done yet!”

Avryl told me on more than one occasion that she disliked the word “palliative.” It was a word she would have liked to eliminate from her vocabulary. After reading Priya Sayal’s touching column, in which she wrote: “Palliative care is broken. The goal is to support people as they approach one of the most challenging times they will ever face — emotionally, intellectually, and financially. The goal is to support – so why not call it supportive care?” I wholeheartedly agree.

Patients who are dealing with a terminal illness can use all the emotional and physical support we’re able to muster in an effort to make their situation somewhat less foreboding.

While there’s no doubt that denying the gravity of one’s illness won’t make it go away, there’s something to be said for offering hope. Something as simple as using a different word, i.e. supportive in place of palliative, is a good place to start.

Tom Groot, Grafton

Those of us dealing with either “palliative” or “long term” care, as they are known today, must update our thoughts and support the new culture of caring for our loved ones.

A name change is only a first step in raising the awareness of shortcomings in our Ministry of Health and Long Term Care. Giving us an opportunity to improve the quality of life, as well as the quality of end of life situations may well be “supportive care/supportive living” and my favourite, “care for the long term.”

New names, new thoughts and a new path for care.

Ernie Ilson, Mississauga

Balfour Mount, the “father” of modern palliative care in Canada, coined the term “palliative care” in 1975 so that one term would be acceptable in both English and French as he brought the movement to Canada (from Latin palliare: to cloak or cover). The term “palliative care” or “soins palliatifs” in French, is therefore uniquely appropriate in the Canadian context.

Palliative care programs developed within larger health-care institutions, while hospice care developed within the community as free-standing, volunteer programs. Over time, these gradually evolved from individual, grassroots efforts to a cohesive movement with the same goal: to relieve suffering and improve quality of life for those who are living with, or dying from, an illness. And so the term “hospice palliative care” (or HPC) was coined.

We are at a crossroads: Awareness of hospice palliative care in Canada has never been higher with the recent media spotlight on assisted dying. We can either focus on making HPC a guaranteed right in the next Health Accord being negotiated right now, or we can engage in a re-branding exercise.

We are largely a death-denying society and no matter its name, hospice palliative care will continue to be the pariah in the room until it is made a healthcare priority.

More from the Toronto Star & Partners

LOADING

Copyright owned or licensed by Toronto Star Newspapers Limited. All rights reserved. Republication or distribution of this content is expressly prohibited without the prior written consent of Toronto Star Newspapers Limited and/or its licensors. To order copies of Toronto Star articles, please go to: www.TorontoStarReprints.com